Lilly's journey

Hi everyone, my name is Olivia; I would like to fundraiser money for my friends Louise&Steven's beautiful baby girl Lilly

 

They're little miracle is 15 months old and is the most courageous little fighter you will ever meet; she has a smile that can light up a room. They didn’t have a straightforward pregnancy; an emergency c-section delivered Lilly. She hasn’t had it easy, Lil was born prematurely and had to spend time in NICU. This was when her fight truly began; Lilly struggled and needed support with breathing and feeding.

 

From 8 weeks old Lilly started to deteriorate quite quickly Lilly had recurring infections and chest infections as was just givin antibiotics after antibiotics Little Lil would be in severe pain every time she had her feed. This was horrific for her family to watch their little girl struggle and battle with feeding time. It was so heartbreaking for them to watch. All the health professionals they saw kept telling them that she was screaming because of Colic and she had mild reflux. Lilly also never opened her bowels. They told the family she suffered from server constipation. Her family knew all this agony was not down to these conditions most babies are diagnosed with. Louise and Steven were out of their minds because no one would listen, and they didn't know how to help their precious little girl. The week went by, and frustration and uncertainty brewed, and Lilly became ill and was finally admitted to the hospital. She had lost more than half her body weight; her parents were right; there was something a lot worse happening to Lil.

 

Lilly was in their local hospital for weeks when she was then transferred to Alderhey as their local hospital said they had never come across anyone like Lilly before.

 

They have tried every avenue to get Lilly to keep anything down her peg, but they remain unsuccessful; Lil now has a drainage bag as her body doesn't drain and get rid of gastro contents like everyone else. She is waiting to get a JEJ Extention done so her milk will go into the small bowel. The hospital has now discovered a hole that doesn't open and close like everyone else, so she can't have anything in her stomach, if she does it triggers fits of her server reflux and can cause Lilly to have absence seizure Also after ever vomit Lilly has she will sleep for hours at a time after it ! Lilly is now fed by TPN via broviac line which is done through central arteries which comes with risks she's had sepsis twice and her parents nearly lost her the first time. Doctors dont think theres anything else they can do for Lil and think she will be TPN dependent if they can’t find out what is wrong with Lilly. This alone is life changing and comes with great risk like sepsis and kidney failure. However this is the only thing keeping their little girl alive at the minute.

 

 

When Lilly started having absence seizurea , the hospital didn't know why; they were unexplainable because Lil was supposed to have minor gastro problems right? Lou demanded an MRI scan which Alderhey agreed to.

 

There world is tipped upside down Lilly is awaiting all kinds for diagnosis , they have also said they might never find out why Lilly can’t feed or keep her weight on the hospital says she is very complex child. no diagnosis a parents ever wants to hear. Tests and treatments was missed because they was to quick to put it down to something minor and blamed that we have been in a pandemic!!!!!!

They also still can’t work out what is causing Lilly to vomit and loose so much weight they say she’s a Mystery and they don’t really no what eles to do with Lilly. 

Lil is so lucky to have her parents fighting for her and getting the answers they deserve for their prescious little girl.

 

Beautiful Lilly still remains as an inpateint at Alder hey hospital and has been in and out for the past 8 months more than half of her little life, she is getting new diagnosis every week and is now a complex little girl who needs speciallist therapy, equiptment including a special chair and everything that else that comes along with complex kiddos.

 

Lilly cant walk, talk or eat all the things she should be doing for a 15month old baby we need all the support to raise funds to get specialised intensive physio and equipment to give her the best chance in life.

 

 

The family want to give Lil the best possible chance at life and would like to go private as there are more treatment options. Lilly has so many diffrent problems that the NHS hospital are still trying to diagnose but haven’t an idea Lilly has lot of specialst teams involed including Neurology, cardiolagey, ortherpedics/truma & gastro and alot more. 

 

Lilly deserves every operation and treatment that she is suitable for and going to give her a better quality of life. Lillys parents won’t stop fighting for there child to get the right answers and diagnosis that Lilly deserves . 

lilly has Chronic intestinal pseudo‐obstruction as the initial feature of pure autonomic failure

lillys muscles and nerves dont work properly in her body

 

Louise Lillys mum said;

 

Lilly has fought and fought for over a year now and we wont stop fighting for our baby girl she currently fighting off another round of sepsis. We nearly lost her last time and had the dreaded news she has it again.

 

Please help us fight and give our baby girl the best chance and treatament she coud possible have. We only want the best for our gorgeous queen please she is our world and our inspiration any help and support would be much appriated or any ideas on how to raise money for our baby girl

thank you so much for taking you time in reading lillys journey.

 

Follow Lillys journey on Instagram 

@lillys_journeyxx